In November, Nick and I were invited to a meet and greet in Green Bay. The event was arranged by Lola from the state CF office. She emailed and stated that she wanted to get CF parents in the Fox Valley together so we can share stories and get to know one another as a support system. Of course with a chaotic schedule and Maddox getting over a cold, I said “Yes, we’ll be there”. We arrive and there were four other families and Lola there. We enjoyed a lunch, shared our CF’ers stories, showed pictures, cried and laughed together. Then after lunch one of the moms had a surprise for us! A board and paint with CF stencils! O. M. G. this was right up my alley! Nick and I were each able to paint a board!
The drive home from our event was an emotional roller coaster as each story was so unique and had so many ups and downs. One of the families has been through so many procedures, medications, treatments and she had the most positive attitude of a mom with multiple children with special needs. Another family shared that she had a struggling support system, the school her child was at didn’t understand what CF was. Anohter family shared that their CF’er is off to college and excelling with awesome grades. We were able to hear the stories of things we need to watch out with Maddox and schools and how much the CF foundation can help and support if schools are not in compliance. One of the stories we heard was that the school nurse was trying to give a CF’er the wrong medication. Mom was called as the CF refused the medication and mom walked right up and agreed that the nurse had the wrong stuff! Seriously! How scary!
We are so fortunate to have a school/day care that is all over his medications. We are so fortunate to have our support system that if we need the mental break for an afternoon, all we have to do is pick up the phone and call (or text- who really calls anyone anymore 😉 ). We are so fortunate that the treatments seem to be working for him! We are all in the same battle for our CF’ers to gain weight and were able to share tricks. We are fortunate to learn of the positive outcomes of the new medications that some were on and what our future could look like!
As we were driving home, I looked at the boards we painted and had a great idea that we are going to make as many of these boards we can for everyone for Christmas. Let the chaos continue! After a quick call to Simple Sparrow in the Fox Valley and a trip to Menards for the supplies my vision was coming to a reality!
As the holidays quickly approached, some people were able to paint their own boards and some boards were specially painted as some of our Christmas celebrations didn’t have the time to set everything up. We had perfect timing as we were able to paint a board for the CF team up in Green Bay at our quarterly check up(blog post update to come on that).
Thank you to Nick for cutting, sanding and staining all the boards! Thank you everyone for supporting us and our CF journey! For those of you that didn’t get a board (yet), let me know as I can make as many as we need to so you can be apart of our mission for CF Awareness!
Merry Christmas to everyone and thank you again!